#1690 Autumn Needs an Answer - Part 1
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Autumn, diagnosed type 1 at 13, discovers after 31 years she’s MODY. We unpack misdiagnosis, GLP-1s, insurance roadblocks, self-advocacy, and how one podcast episode changed her entire life.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Welcome back, friends. You are listening to the Juicebox podcast.
Autumn 0:15
Hi, good morning. My name is Autumn. I am a 44 year old female who was diagnosed with type one diabetes in 1994 at the age of 13.
Scott Benner 0:24
If this is your first time listening to the Juicebox podcast and you'd like to hear more, download Apple podcasts or Spotify, really, any audio app at all, look for the Juicebox podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management. Go to Juicebox podcast.com. Up in the menu and look for bold Beginnings The Diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. Nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. This episode of The Juicebox podcast is sponsored by the Omnipod five and at my link, omnipod.com/juicebox you can get yourself a free, what I just say, a free Omnipod five starter kit, free, get out of here. Go click on that link, omnipod.com/juicebox check it out. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox. Links in the show notes. Links at Juicebox podcast.com. I'm having an on body vibe alert. This episode of The Juicebox podcast is sponsored by ever since 365 the only one year wear CGM that's one insertion and one CGM a year, one CGM, one year, not every 10 or 14 days ever since cgm.com/juicebox us med is sponsoring this episode of The Juicebox podcast, and we've been getting our diabetes supplies from us med for years. You can as well us med.com/juicebox or call 888-721-1514, use the link or the number get your free benefits check and get started today with us. Med,
Autumn 2:31
Hi. Good morning. My name is Autumn. I am a 44 year old female who was diagnosed with type one diabetes in 1994 at the age of 13,
Scott Benner 2:41
auto is most people's favorite part of the year. Don't you think?
Autumn 2:46
You know, I do enjoy the fall. However, I could skip winter and go right back to spring, because here in Michigan, winter is quite brutal. Oh,
Scott Benner 2:54
Michigan, yes, yeah, it's basically Canada. It's not good. No, no, I hear you. My brother's up there in the Wisconsin. I don't know what he's doing. He says it's more it's easier for him.
Autumn 3:07
No, I tell my husband regularly, like we are adults. Why do we choose to live in a state where our face freezes off in the middle of winter? Like, what are we doing here?
Scott Benner 3:15
Isn't that interesting? Can we take a sidebar before we even begin? Absolutely awesome everyone says that, but no one does anything about it,
Autumn 3:25
right? Those damn kids get in the way. You can't just leave them.
Scott Benner 3:29
It's what it is, right? Like, because I'm in the same position, like, nothing would make me happier than getting out of here, like, and only about the weather, actually, like the place. I like the people, like, I'm good with all that. I would prefer we did a little traveling this this summer, and I got a chance to see San Diego for the first time. Okay? I might rather be living outdoors in San Diego than in my house in New Jersey, right? It's so nice there the weather, but I won't actually, first of all, it's bad example, because I and most other people can't afford to live in San Diego. But like, that part, yeah, there's that part, but that's that part. Aside for a second. If I could, I wouldn't go, yeah, and it's the end. It is about my kids, Partially, partially. But it's also about, like, I don't know, there's that thing hanging on the wall over there. Like, how the hell am I getting that down? Won't it just be easier to die and make my kids take care of this? You know what? I mean?
Autumn 4:25
Yes, yes. And then you'd be painting every bedroom or room in the house instead of just one. So
Scott Benner 4:30
yeah, Autumn unfairly knows that we're painting our living room, which was before we were recording but nevertheless, so if it's money or help or I don't know what it is, it slows people down. But it's interesting that so many people have that. Like, I really wish I could go hear desire, but so few people actually do
Autumn 4:48
it. Yeah, I mean, I moved around quite a bit growing up, and it was important for me, once we had my son, that he had a place, that he had roots, where he could say, I grew up with these kids. You know, I wore diapers with. Med daycare, and then proceeded to go to elementary, middle school, high school with them. And my husband and I have talked a lot recently, like, what happens when he's done with school? Because if he doesn't choose to stay here, you know, what's really keeping us here? It's just him and I. We have very little family. So you know, do we relocate? Do we look to the sunny, sunshine state of Florida? Is it somewhere down south. I mean, I don't know, but possibilities are endless.
Scott Benner 5:23
Yeah, they really are. But you'll die in Michigan.
Unknown Speaker 5:26
I know you're 100% right.
Scott Benner 5:29
If you moved around a lot as a young person, how did you end up in Michigan? No offense to people in
Autumn 5:33
Michigan. Yeah, no. So I actually was born here in Michigan, and Port Huron and we took a turn down to Missouri for a few years, came back to Michigan and landed on the west side of the state, which is where I was diagnosed with the diabetes, came back to the east side of the state, went to university down in Ypsilanti, which is where Eastern Michigan is, and just kept my life down here after I had started a career and friends and family and yeah, but I mean through that time, I had four different high schools. My dad in automotive, he's an automotive engineer, so just constantly moving with the job. And you know, you just go where your parents go, obviously, until you're an adult. So yeah,
Scott Benner 6:12
did you ever get a chance to speak with your father? Do you think he was, Do you think he was, in retrospect, happy that he moved around for his job? Or do you think he wished he would have laid down roots.
Autumn 6:21
But you know, that's interesting that you ask that. So I'm fortunate. My dad is still here. He suffered a major heart attack back in May, the quadruple bypass like his kidneys failed, like the whole kit and caboodle, by the way, he's also diabetic, which we'll obviously get into a little bit further. But one thing I hear from my dad a lot now is that he wishes he had never left Fort Huron. He wishes that he had stayed there. He had, you know, laid the roots that he had grown up with all of his friends that you know, he had known since grade school. So,
Scott Benner 6:50
yeah, interesting. So you're telling me that no matter what I do, I'm going to regret it later.
Autumn 6:55
Pretty much awesome. Are you crying? Did I make
Scott Benner 6:57
you cry on him?
Autumn 6:58
No, but I am a crier. So there will be a point today where I'm going to be like, I got to grab a tissue. So, you know, like, I'm not a crier. We're like, Oh, boo hoo. Like, I'm just a very passionate individual. So like, that'll come out. You'll you'll definitely get to hear that. And if you could see me, you would know my nose is like, bright red, like Rudolph the Reindeer, and like, I can never hide that I've been crying in any way, shape or form. I wish you
Scott Benner 7:19
could see me in my regular life, but I'm like, I'm not yelling. I'm just really passionate,
Autumn 7:24
right, right? Exactly.
Scott Benner 7:26
I really do feel that way. I just really, like, generally, you know, when that happens, I'm either very excited or sad. You know, it's not usually anger, like, it's just like, I get louder when I'm talking and I'm motivated about something, and other people who don't know that are just like, what's wrong? And I'm like, you know, it's funny, because I'm adopted, so I don't really know my background, but I did that 23andme thing because I wanted the Chinese to be able to control me or whatever it is, right? And I now found out I'm like, mostly Italian, oh, and I want to be like, if it's because I'm passionate, because I'm Italian, but am I like because I didn't grow up with it? You know what I mean?
Autumn 8:08
Like, sure, sure, nature versus nurture. It's just the part of you. I
Scott Benner 8:12
Maybe I don't know. I'm just saying it's not my fault. Okay, so you were how old when you're diagnosed? Did you say 13 or 14? I was 1313. Look at me. Remember things, good work, any memory of the time? Yeah.
Autumn 8:25
So it's kind of what led me into, you know, where I am now, when I started listening to the Juicebox podcast, book, I can't even speak. I'm just kidding.
Scott Benner 8:38
I really have never been to Michigan. I'm sure it's lovely,
Autumn 8:42
you know, they do say a lot of great things about this date. But anyway, I digress. So, yeah, I started listening to your podcast back in January of 22 and I mean, I had been diabetic for pretty much my whole life at this point, and I'm learning so many new things. And people will always bring up their diagnosis, and like, you know, they were typically, you know, very ill DKA, you know, the sudden weight loss, all of these things. And I'm thinking back to my own diagnosis, and like, gosh, I don't, I don't remember that. Like, I remember having migraine headaches all the time that I constantly needed something to drink. And it was always like, Mom, I gotta go pee. Like, I can you pull over. Like, we need to go to the gas station. I gotta go. The migraines got to the point where, you know, my mom just like, something's not right. We need to get you checked out. Ended up in the emergency room. You know, my blood sugar is over 500 and immediately, at that point, they're just like, oh yeah, she's a type one diabetic. And we're going to send you over to the department where they're going to teach you how to shoot insulin into an orange. And this is just going to be your life as you move
Scott Benner 9:40
forward, the Department of orange shooting, yes, yes.
Autumn 9:44
You know, I don't know why they pick an orange. It's not like you can really pinch that up so you can get under the muscle, into the fat. But hey, whatever it worked in 94 I'm sure it still works today.
Scott Benner 9:53
I've heard other people say bananas. It seems like whatever fruit is is a little old in the cafeteria, is what you get. Maybe. Yeah. Wouldn't that be something if there's like, an entire group of people who think about it like it's some rule, like, you inject into an apple or an orange to learn how to do injections. But really the answer is that it's just whatever fruit is going bad in the cafeteria.
Autumn 10:13
Yeah? Exactly. They don't want to have to waste it, so they got to use it somehow. Yeah,
Scott Benner 10:17
here, use these. Yeah. So you're on your way. Did you Your dad has diabetes type one or two,
Autumn 10:22
so he was diagnosed as a type two. He was probably 3536 at the time. And then his mother, also diabetic type two. And then his great grandmother, diabetic type two. They weren't diagnosed until, you know, their 60s, so we never really thought too much about them, because, you know, you get older and obviously you become diabetic. But the one thing that really sticks out for me about, you know, my grandma and my great grandma is that, like, they weren't unhealthy, they weren't overweight, they didn't they weren't the typical things that you might think of a type two diabetic that, oh, you're just not eating well and you don't exercise enough, like they checked all the boxes of Healthy People, so them being diabetic doesn't make sense to me now, and you know, that's part of why I've been on this journey to figure out what actually is wrong with me. Yeah, I
Scott Benner 11:10
hope I live long enough to see a number of things. But one of the things I'm interested in, it's more specific to the podcast thinking about what you just talked about. My dad had type two diabetes. My grandmother, his mom did his brother. Did? You know my grandmother grew up farming, you know what I mean, like she ate fresh vegetables, fresh livestock, and moved constantly, and still had type two diabetes, and my dad had that hard belly. You know what I mean? So did his brother. I'm just wondering, like, at what point are they going to take those injectable glps, turn them into pills, and you're going to just go to the doctor one day and somebody's going to go, like, look, trust this. You're going to have type two diabetes one day. And get ahead of it. And I wonder, I wonder for how many people will that perhaps make it so that it never occurs? Or how many people would make it so that if it occurs, it's muted to the degree where it doesn't shorten their life or create strokes, which is what killed my grandmother, or heart attacks, which killed my uncle, or, like, you know, you know, like, etc, I wonder.
Autumn 12:20
Anyway, you know, I wonder this all the time, because, you know the GLP medication, I'm on a tricepetide Now, the mangiorno, 15 milligrams a week, and I can tell you, hands down, this medication completely changed my life. Sorry, this is where you might get some of the tears. No,
Scott Benner 12:36
you're gonna make me cry, because I think it changed my life too. But go and we're gonna sound like two diabetes that are like, going like, gops are awesome, but go ahead. Like,
Autumn 12:44
I mean, they just, they really are, Scott, I mean, you know, like I said, I started listening to your podcast, and I'm learning more and more. And you know, insulin resistance had become a really big problem for me, and I had gone to my endocrinologist, and she's like, well, you're on a pump, so we can't do anything really with metformin, because it can cause DKA, and this, that and the other. And I'm like, Okay, at this point, I've been diabetic. 2728 years. I've never had DKA once. I'm not scared of it. Like, can we please try it? No, no, no, no. She comes back to me probably six months later, like, oh, they changed. The FDA said, you can. I don't know all the medical bullshit that they try to throw it.
Scott Benner 13:20
I gotta jump in. Hold your thought. Yeah. What an indicator from your provider that they don't know what they think about anything. They just know that it was written down somewhere, and so they're not gonna do it. Yeah,
Autumn 13:30
exactly, exactly.
Scott Benner 13:34
You've probably heard me talk about us Med and how simple it is to reorder with us med using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you, but I'm set up to be called if I don't respond to the email, because I don't trust myself 100% so one time I didn't respond to the email, and the phone rings the house. It's like, ring. You know how it works? And I picked it up. I was like, hello, and it was just the recording was like, us. Med doesn't actually sound like that, but you know what I'm saying. It said, Hey, you're I don't remember exactly what it says, but it's basically like, Hey, your order's ready. You want us to send it? Push this button if you want us to send it, or if you'd like to wait. I think it lets you put it off, like, a couple of weeks, or push this button for that. That's pretty much it. I pushed the button to send it, and a few days later, box right at my door. That's it. Us. Med.com/juicebox, or call 888-721-1514, get your free benefits. Check now and get started with us. Med, Dexcom, Omnipod, tandem freestyle, they've got all your favorites, even that new eyelet pump. Check them out now at us, med.com/juicebox, or by calling 888-721-1514, there are links in the show notes of your podcast player and links at Juicebox podcast.com to us, med and all the sponsors. Today's episode is brought to you by Omnipod. Did you know. Showed that the majority of Omnipod five users pay less than $30 per month at the pharmacy. That's less than $1 a day for tube free automated insulin delivery, and a third of Omnipod five users pay $0 per month. You heard that right? Zero. That's less than your daily coffee for all of the benefits of tubeless, waterproof, automated insulin delivery. My daughter has been wearing an Omnipod every day since she was four years old, and she's about to be 21 my family relies on Omnipod, and I think you'll love it, and you can try it for free right now by requesting your free Starter Kit today at my link, omnipod.com/juicebox Omnipod has been an advertiser for a decade. But even if they weren't, I would tell you proudly, my daughter wears an Omnipod, omnipod.com/juicebox Terms and Conditions apply. Eligibility may vary. Why don't you get yourself that free starter kit, full terms and conditions can be found at omnipod.com/juicebox
Autumn 15:59
so she comes back, and she's like, Hey, you know, like, we can give this Metformin a go if you want to try it. And I'm like, hey, you know, I don't have anything to lose. Let's go. It destroyed my guts, like I already was, like, a, not a everyday pooper, like I was every three to five day. And like, I always had problems where I'm like, why am I constipated? Why is it like, oh, I can go and that. Here goes the I always compare it to like a champagne bottle. There goes the cork, and just all the flow, right? So anyway, take the Metformin. It destroys me. I'm like, Nope, that's not going to work, so I just grin and bear it like I'm insulin resistant. It's because of how long I've been taking medication, according to my doctor, blah, blah, blah, blah, blah. So then, of course, we start hearing all of these things about this lovely drug called ozempic, and how it's helping people with type one diabetes. And you know, going back to the same endocrinologist who had been with for 17 years, who helped, got me on the pump, helped me through my pregnancy, all of the things, you know, she's like, Nope, I can't provide that to your type one diabetic. Like, okay, but it's going to help me with the insulin resistance. Wouldn't budge. She's like, you know, why don't you go talk to your primary care, see if they'll help you? Great. Go to my primary care. And thankfully, an amazing, amazing doctor. She was like, you know, what if we think it's going to help your insulin resistance, let's do that. And immediately I'm like, Thank God, somebody is going to help me here. And I think at the time, I was using probably anywhere from 180 to 200 units a day through my Omnipod. It didn't make sense, obviously, which is why I'm like pushing to find something to help, right? Couldn't lose weight, couldn't do any of the things. And I start taking the ozempic in the fall of 22 and I didn't see any really immediate impact. I mean, obviously, as you know, that really small dose isn't necessarily doing a whole lot, but you know, what I did notice is that I was starting to feel better, like I was starting to feel a little bit less inflamed or puffy, if that makes sense, it does, yeah. And then I'm like, Oh, that's interesting. Like, I'm not using 180 to 200 units anymore. I'm using like, 160 to 180 and as my dose kept titrating up, my insulin needs started going down. So we get about six months into the journey, and then the insurance company finally figures out she's not in the right box. She doesn't check the type two box. She's a type one. You can't have the medication any longer. Like, okay, well, that's extremely up, because here I am getting better, but you're telling me I can't have a medication because your black and white box doesn't fit for me. Like, make that make sense? How does that even make any sense to anyone in this world? So thankfully, my insurance company, they cover it for weight loss. And I was like, You know what? Write it for weight loss. Put me on set bound. If that's what it needs to be, then I will go that route with
Scott Benner 18:51
it. A whole generation of people autumn who refine themselves saying something they thought they'd never say, Well, the good news is, I'm fat.
Speaker 1 18:58
So right, exactly thing.
Scott Benner 19:01
You never thought you'd be, like, gleefully telling somebody, but here you are. You're like, oh, wait, I yeah, I make it under this one, awesome, yeah, geez,
Autumn 19:10
oh, that diagnosis on my chart, and my chart, that's Oh, class one, drug induced. And BC, oh yeah, that's me. Okay, yep, I can go ahead and take that for for the weight loss,
Scott Benner 19:18
whatever box makes this work, and let's go, yeah, yeah.
Autumn 19:22
So, you know, I'm taking the medication, and everything is going well, I'm down to, like, I don't know, maybe 60 units a day at this point. And here comes the insurance company. Hey, we're no longer going to cover this medication for weight loss. We don't cover any more medications for weight loss. And, you know, starting August of 2024, that's when we're no longer going to write your prescription. And it wasn't just me, it was everybody on the plan. And I'm like, Okay, what are we going to do here? Because I never in my life had felt this good. I mean, the insulin needs were down. I did lose weight. It wasn't immediate for me, like, you know, it took probably that first full year before I even saw the scale. Move 2530 pounds, but it happened over the course of time, and obviously a huge benefit for me, it was the fact that I felt good. I was having better bowel movements. You know, the inflammation was gone. I had never felt this healthy in my life. So I'm just racking my brain with like, How in the hell am I going to afford to keep this medication if I have to pay for it out of pocket. Would have figured it out if it meant taking a second job, or, you know, or whatever it meant, like I was going to figure it out because I knew I could not live without this medicine any longer. Yeah, so you can, I know.
Scott Benner 20:33
I just want to give you a second to take a breath. And this story is so common and literally just happened with a person in my personal life that I was I almost had counseling, but it makes me feel like I'm a youth pastor, but I was talking to a friend of mine, and they were going through the exact same thing, being told by a physician that if they could just get their a 1c up a little bit so that they have type two diabetes, then we could get you this medication. This episode of The Juicebox podcast is sponsored by the ever since 365 get 365 days of comfortable wear without having to change a sensor. When you think of a continuous glucose monitor. You think of a CGM that lasts 10 or 14 days, but the ever since 365 it lives up to its name, lasting 365 days. That's one year without having to change your CGM with the ever since 365 you can count on comfort and consistency, 365, days a year, because the ever since silicone based adhesive is designed for your skin to be gentle and to allow you to take the transmitter on and off, to enjoy your shower, a trip to the pool or an activity where you don't want your CGM on Your body, if you're looking for comfort, accuracy, and a one year wear you are looking for ever since 365 go to ever since cgm.com/juicebox
Autumn 22:11
To learn more, right? So in like, that's the that's the craziest part. It's like, I literally have a doctor telling me, okay, if we can't get the medicine, what can we do to stretch the medicine as long as possible, until we figure out a solution? Like, you're a medical doctor who knows what I need to help me to be healthy, but yet, because an insurance company says they don't fit in that box, I'm going to have to manipulate this drug and stretch it out 1012, days so that way I can continue to be healthy. Like, what in the world is happening here? You know?
Scott Benner 22:40
Well, and it comes down. Listen, we could dig into it, and I don't understand that enough to, like, really pick it apart. But it's also about pricing from the pharma company and and the insurance company's unwillingness to pay for it like they're having a back room. It's kind of like commiserate to when your cable company sends you an email that tells you that you should go yell at Fox, or you're not going to get football anymore, you know what I mean, right?
Autumn 23:03
Yeah, exactly, exactly. Anyway, yeah. So again, that you your podcast completely changed my life, because in July of 2024, I am listening to an episode about Jim, and Jim is a type one diabetic who doesn't take insulin and only uses, you know, the tricepatide or the semaglutide. I don't recall which one I believe he was on Manjaro. Okay, Manjaro, so Jim talked about his antibodies and how, you know, he had the antibodies. So technically, he fit the box for type one. And I'm like, holy, I don't ever remember anybody in my life saying, Hey, you are type one, and here are the antibodies that prove it, or or anything like that. And I'm like, All right, Hey, Doc, I think I have an answer or a solution to help us get to next steps. Can you test my antibodies? And she's like, I love it. Yes. Let's run the test. You can't even imagine how mind blown I was as over the course of three, four weeks, these test results start coming back, and I don't have not one, not one antibody. Ironically enough, I have C peptide. I had a score of 1.1 and when I went back to the original endocrinologist, who wouldn't prescribe the ozempic For me, she said that C peptide is still too low. It's too low you're a type one diabetic. This is in your head. You need to accept it, and you need to move on. And I'm like, wait a second. Do you not see all of the improvements my blood work? Do not see all of the improvements. And wait, do not see these things. And she just refused to help. So at that point, I was like, let's find a new endocrinologist. So I did some research and found a lovely lady up at the University of Michigan who oversees their atypical diabetes department. And I purposely waited another six months just to see her, because I felt like if there's anybody that's going to be able to help me, it's going to be the lady in charge of the whole department, right? So I. I went and saw her in March. I want to say it was, yeah, it was the very beginning of March, and she went through everything with me, and she was like, Well, you know, I don't know if you're Lada, I don't know if you are Modi, I don't know what you are, but I know you're not a type one, and we're going to prove it by re running your CPEP CDE. Like, okay, how do we go about doing that? Because this was the score last time she said, Well, your previous endocrinologist failed to see that your blood sugar was only 106, when you took that test. So I want you to get your blood sugar up to 200 and take the test and see what it comes back as, like. That's going to be kind of difficult, because even if I were to go and eat a bunch of candy, have a Coke, whatever it is, the mongiorno or at that time it was the Zeb bound is keeping my blood sugar in such good control, I don't even know if I can get it to that point right. And, oh, by the way, I'm only using 20 units of insulin at this point. Like we'll give it a try. So I go take the test. She calls me, hey, come into the office, and my C peptide score at that point, with a blood sugar of 170 was up to 2.4 so she said, You are a type two diabetic. You are not a type one diabetic, misdiagnosed. You know, we see this all of the time, unfortunately, and as we've gotten smarter with testing, you know, we're hoping to do a better job as we go forward. So she kind of went back to Lada, and I was like, that doesn't make sense to me. I don't think I can be lotta if I was diagnosed at 13. And she said, Well, what do you think about possibly Modi? We went through my family history, with my dad, with his mother, with my grandma, great grandma, and she's like, I think that we should investigate this more. Like, all right, cool. It's like, but in the meantime, would you be willing to take your pump off? And I'm like, why don't I don't know, because I have my primary care over here saying, hey, the reason you're so healthy is because the pump is working with the Z bound and that it all has to work together for you to stay this healthy. And, like, kind of nervous about it. I haven't went MDI in 17 years at this point, like, what? What's going to happen to me? And just like, well, you just got to have a little bit of trust. And I'm like, okay, so I took off my insulin pump on March 24 of this year. My a 1c was a 7.5 at the time when I just went for my checkup here in July, not only had I lost 40 pounds, but my aim 1c was at a 6.1
Scott Benner 27:27
and you're not using insulin. I am
Autumn 27:29
currently using 14 units of Lantus a day, and then my once weekly shot of mangiorno with the 15 milligrams. But what we discovered through the genetic testing is that I am actually Modi four, which is like the 1% of the 1% of all Modi patients. So it's the PDX one gene that has the mutation in it. The way that I'm understanding it is that during the developmental phase in the embryo, the pancreas either doesn't develop, which is where you get the neonatal diabetes, or your pancreas just isn't, I guess, like, the right size, like it's smaller than what it should be, so you don't have as many B cells in there. And I'm kind of in a spot right now where the lady that helped me get to this point is telling me, hey, let's stay the course with insulin. We'll try to get off of it. But you know, you're doing really well. I don't think we should change anything. And I have a new doctor that I have recently connected with through the registry of Modi at the University of Michigan, who's telling me, I think that you could get off of insulin completely, and you could take sulforanoria In addition to the tricepatide, and you'll be good to go. So I meet with my doctor this Monday to find out, hey, what do we got to do to try this? Because she's concerned that it will force me to have lows, that, you know, it could cause some issues with me eventually needing insulin again. And like, well, I don't really think I have anything to lose. I mean, I took off the pump and I trusted it, and here I am. I want to try this new medication to see if it really means I no longer have to take insulin, but I can tell you that if I use any type of noble log or rapid acting insulin, it's because I chose to get a really cheap meal full of carbs or over indulged in something which doesn't really happen, just because the tricepatide keeps you from wanting that, as you know. But yeah, I'll use maybe two or three units of rapid acting here and there, but pretty much it's just that 14 units Atlantis and my once a week. So like I said, my life completely changed because of you, your show, Jim, and those antibodies, and just basically saying you to the insurance company, because if it were up to them, they would have just kept me in that one box and kept me sick. I didn't meet the they didn't want to personalize my health care. And I think that's the travesty in this world.
Scott Benner 29:46
Oh, my God, autumn, that's an insane story, yeah. How did you figure, like, where did you get the fortitude to fight through all this and the knowledge, or did it just kind of. Lay in front of you like a path, and it just started to make sense as you dug deeper, like I'm trying to figure out how you got through all of it,
Autumn 30:06
you know, I was, I was fortunate growing up that my mom always had taught me to advocate for myself. And if something didn't make sense, when a doctor, you know, said, Hey, this is what it is that just because they went to school for all those years and they wear a white coat. It doesn't mean that they know everything and that you should ask questions and you should push back. And I mean, as I was on this journey, and when I would ask the questions, if it didn't make sense, I would have to stop and say, okay, logically speaking, remove all of the insurance companies and remove all of this, what would be the best thing? And it always kept coming back to taking that tricepatide And just keep pushing forward, getting more answers. And once I learned what Modi was, I just I couldn't stop Scott. I was like, I have to know, I have to know if this is what I have, because I've gone 31 years of my life not knowing, and here we are. I mean, like through my adolescence, it was just the random, rapid acting insulin that you would need here and there. And then it became 7030 and then when 7030 did not work any longer, it was like, Oh, here's your Lantus. And I'm talking obscene amounts of insulin. It's like, you know, like the doctor said, like your body just didn't know what to do with it. You need the tricepatide to unlock those two things so that way, your body can put everything to use the way that it's supposed to be put to
Scott Benner 31:22
use. I don't think I've ever been happier making this podcast than I am right now. I'm being serious,
Autumn 31:29
yeah, I just, you know, and I had emailed you probably it was about this time last year, and I'm like, you know, my doctor's telling me I need to keep the Omnipod, but I also need this. And you know, what would you tell your daughter to do? And you know you have gotten back to me and like I tell her to say, Screw the insurance company, and who cares what their spreadsheet looks like, and keep pushing. So you know you also helped encourage me to keep going and to find the answers to get where I am
Scott Benner 31:53
now. Oh no, I'm so sorry to tell you that I don't remember that, but I'm glad, I'm glad, I'm glad to know that I did the right thing. You did. You did. Wow, I appreciate you sharing this. I'm not I'm not ending the conversation, but I really appreciate you sharing this with me. Thank you so much. Yeah, I'm so happy for you. Me too. Yeah? I mean, I don't want to make this about me, but I will for a half a second please. When I started talking about this stuff, there were people out there that really just took the light in, heating up a sharp stick and shoving it up my you know, and in the same feeling of, like, whoa, you can't take Metformin because it'll cause the eka that's written down somewhere now, you know. Or and then it became, well, you can't do a GLP, one that's not for type one diabetes, that's for this, and it'll cause DKA. And I'm like, and I understand the study, I understand where people are concerned. I think what ends up happening is, you do some studies on a thing you don't completely understand yet, and you know, glps are just the core of your conversation, you know, today. But I think this goes for a lot of things. We see something new. We start to try to figure it out. People identify the scary parts and the exciting parts. And some people's brains flow towards, I want to be excited about the exciting stuff. And some people's brains flow to, I want to be scared about the scary stuff. And and then these things get written down. And then everyone in the middle, all the people who are rule followers, start saying, No, there's a rule. You can't do this. You have to, it's written down. It's got to be true. And everything about you was written down somewhere, and most of it wasn't right, right, yeah, right. And, yeah, yeah. And you were willing to, like, be in the part that just says, like, I want to be excited by this and see what it does, because why not? Right? And I think there's a lesson in that for everybody, hopefully. But then, you know, moving forward, I said, I'm seeing a lot of things happening here that don't quite make sense, but look positive, I'm gonna just keep doing what I always do, which is let people tell their stories. Like if you think, if anybody thinks that I ran around finding Jim to be on the podcast so that he could come on and tell his story about how someone told him he had type one diabetes. He's got antibodies. He used mangiarno, and he had to, and he stopped using insulin. Like that was not an easy thing for him to tell me, because he knew people were going to come after him. It wasn't an easy thing for me to put on the podcast, because I knew people were going to come after me, and I didn't track him down. He found me right. Like, I'm not out here setting up a narrative. I'm just talking to the people who are interested in talking it's really what I do right? And then to think that I stop and think about the arguments that I watched happen around that episode after it came out, and the pressure that I got from people. You have to take that down. It's dangerous. You're gonna hurt somebody. Blah blah blah blah blah blah blah, I don't know how people. Telling their story is just dangerous. I can't wrap my head around people who think that way. But nevertheless, there they were. So to those people, if you're listening right now, I want you to know that if I would have listened to you, Autumn would still be sick 100% yeah, that's all I'm saying. Like, just keep talking. Yes.
Autumn 35:20
That's Yes, and it was just by happenstance that I picked that that up. I'm driving back from from Ohio, dropping my son off, and he's going out on a boat trip with his friends, and I've got an hour drive. And I'm like, You know what? Let me see what the what the podcast is going today, and it was the episode of the day. And I'm like, holy, my entire life is going to change because of this man, and because of Jim, and because of that story. And I can remember being on the website, or I'm sorry, your Facebook page and and people going back and forth about, well, it's impossible, and you're wrong, and Jim this and Jim that, and it was like, Is Jim really wrong? Or Jim's just sharing what his reality is because that was Jim's reality, and there's nothing inappropriate about sharing that it clearly saved my life.
Scott Benner 36:06
Yeah, it's ironically enough. There's a couple of ironies here. One, of course, is I don't really know who anybody is when I start recording with them, so I'm actually hearing your story as you're telling it, which is on purpose. But I also didn't know that this is what you were going to talk about. And before we started recording, I oftentimes chat with people for a couple of minutes to help them get rid of their nervousness, so that we don't waste the first 10 minutes of the episode, you know, with you getting rid of your nervousness. And I chose to tell you about my you know, it's through with the day du jour and, and it was, it was that someone posted in the Facebook group, you know, how did you get diabetes? You know, I don't or, you know, should I get it doesn't matter. It always leads to the same place. How did you get diabetes? Or would you use the flu shot one way or the other? You're going to get the people arguing about vaccines. So, yeah, like, so that's always going to happen, right? But the but what I'll tell you is that, overwhelmingly, the conversation is good, and that I think there's a ton of value in letting people have it. And there's always going to be a couple of nerd nicks that decide to like argue, and they always come from a crazy perspective. And I want you to know I don't think that a pro or con vaccine perspective is what makes you crazy. I think what makes you crazy is the feeling that if you don't suppress someone else's thoughts, the whole world's going to explode right when you're doing that, just so you know, that's when Scott draws a line and says, Uh oh, you need to visit a mental health professional and but I don't treat you that way. I still say, Look, I got good points here. I'm not telling you you're wrong. I'm just saying you've said what you think. They've said what they think. Now everybody can see both things. Let people decide for their own. And it's always no, you can't let them talk. You can't let them say within me, you're now, I'm hurting somebody. Now somebody's sharing their opinion, and now it's my fault, and that's the part where I always laugh, because it makes me think of when Isabelle started helping me with the Facebook group. At one point, I shared something with her. I said, you're going to realize that one day, in the end, I'm always the bad guy. I said, when stuff goes wrong at the end of it, someone will blame me. They won't blame covid. They won't blame, you know, their mental health. They won't blame the myriad of other things that are involved in their reaction to this. It will be the person who stood up and just said, Hey, could you just let everybody talk, please? Right, and we'll see where this goes. And they never see their part in it. The only thing I can I ever come down to like, that's my takeaway, is that what stops them from just letting those conversations happen without them making them like out of their minds sometimes, is that they don't they never quite see their own perspective clearly. And I'm not saying that I see the whole world completely clearly. I'm just saying that in this moment, I really don't have a dog in the fight, a horse in the race, or, you know, whatever those sayings are, sure, sure. I just want people to, like, harmoniously, say what they think, and then let somebody else say what they think. Yeah.
Autumn 39:20
And, I mean, I feel like if the question was, how did you come down with the diabetes, or how do you think you came into it? Like, isn't that just again, everyone sharing their story? Yes. Like, why does that have to be a right or wrong? It was my story. My story is not wrong. It's amazing, in my opinion, that I have the story I have, but it doesn't mean that I'm wrong for having that right.
Scott Benner 39:39
And to be more candid, like this person was told by their doctor that they thought that the kids vaccine triggered an immune response that might have led to their type one. That's what the person's doctor told them. That's what they've been living with for years, that knowledge that they were given. Then another person starts like, your doctor's an idiot, and they don't know what they're doing. And this is and I'm like, listen, maybe you. Right. Maybe, maybe you're right. Maybe her doctor's right. Maybe something else is right. What I'm telling you, that Autumn story proves to you, is you don't know. We don't know. Humanity is just a constant learning process. Every six months, you can look back at something you were saying six months ago and go, Oh, bad take. You know what I mean? Like, like, great. But instead of then in the present, saying what I'm saying right now is likely a bad take, why don't I just like, since I can't know for sure, why don't I just like, I can't believe I use this phrase. It's not a phrase I ever thought of you. We just offer everyone a little grace, and let's see where this goes, right? Yeah, because if, if you would have, you know, it's funny, because I'm using the gym story to say that if somebody would have shut me down on that, you may not have, you may have turned on your podcast app that day and found a different episode, right, right, right. But I'll go back to 2015 when I started the podcast, and I don't want to give a lot of details, because I'm not trying to. I don't want the person to feel badly, and I don't want them to get crap from people. That's not my goal, but, but someone came to me, not I don't know, felt like it was about a few months after I started my podcast, and they wanted to start their own podcast and asked me for help explain what I've learned, etc, microphones, blah, blah, blah. I was very, I thought, kind. And I, you know, took time out of my day to talk to a person I didn't know that well, if at all, to be perfectly honest with you. And, you know, set the whole thing up and explained how I did it, and wish them luck. And the very end of the conversation, the person said, Well, I'm gonna do it differently than you. You do it wrong. And I was like, What just happened after I gave up an hour of my life? Like, wait what? And the person went on to tell me that I should not be sharing how I manage my daughter's diabetes. That was dangerous and I was going to kill somebody. Oh, my. And I was like, Awesome. Well, good luck, and thanks. And on my way, and I people are going to misunderstand what you're saying, and what that person was really saying was, don't tell people your story. Don't tell them your perspective. Don't tell them about your experiences. Just feed them banal gruel, just verbal bull, right? It'll keep them connected so that you can do what you want to do. That's what I'm going to do. I'm going to go make a podcast. It doesn't say anything, but it'll, you know, and that's what I heard. Now, maybe that's not what they meant. That's what I heard. That's how I feel about it. I feel like if you're not going to honestly share what's happening with yourself, and maybe you're right, maybe you're wrong, maybe you're misinterpreting it, maybe you're over interpreting it, I don't know, but we don't get to the answers if nobody says any of it out loud, that's all. I couldn't agree more. Thank you. That's all. I just want you to know that I believed genuinely, that a decision I made in, gosh, in the, in the 2000s these, you know, when I started writing my blog, and my wife came to me at first, and she's like, Is this okay? Like, just saying what we like? And I was like, I'm like, we're having all this success with Arden. I was like, she's having outcomes that are so much more, more or less variable and lower and like you know better for our health, and we're figuring out all this other stuff. And my response back to my wife is, I said I'm not comfortable knowing how to do this and not telling people about it, right? Because I'm going to spend the rest of my life walking around thinking, well, that kids, a 1c, is high, and I think I could help, but I'm just not going to, because I'm worried about that, and I know that this is a it will seem like a stretch to some people, but that reaction, by the way, it's not a high minded thing for me. I'm not like some like Machiavellian genius, that was just my response in that moment, right? Like the world was telling me Don't say out loud what you do. And I was saying, No, I think that's a good idea in 2007 when I started that blog. And then again, somebody tried to shut me down in 2015 and then two years ago, somebody tried to shut me down again on Jim's story and blah, blah, blah, blah, blah. And I just want you to go back and think if someone stops that guy from saying what he thinks, Autumn's not okay, and there is a ripple effect to things that you do. And I just think that if you're well intended and transparent, that we have to trust adults to be adults and sift through that information. That's all I want to say. I'm done now.
Autumn 44:39
You're absolutely correct, because the reality is, if it hadn't been for you having that perseverance to push through and basically say, I don't care what you think I'm going to do, what I think is right, you wouldn't have helped all the people you've helped. I wouldn't be here right now talking to you and that my husband's like, why is it so important for you to get on this podcast and like, because the. Man's podcast changed my life, but I want to help change somebody else's life, because the reality is, I sat for 31 years misdiagnosed when it happens so often, because people don't know what questions to ask. They don't know to say, You know what, shooting the insulin in that orange is not going to be the answer for my child. I want to know about antibodies. I want to know about C peptide. I want to know more than just what your black and white checklist says you have to tell me,
Scott Benner 45:24
right? And I shouldn't have to follow up your statement with some disclaimer that where I go. Like, no, listen, if you have type one diabetes, you'd obviously have to take insulin and you're gonna die, of course, like no one's would, no one would say no to that, like no one's saying otherwise. But there's a certain brain that hears what you just said and goes, that's dangerous. People are gonna stop taking their insulin and they're gonna die like No, like autumn didn't just stop taking her insulin. She talked to 17 doctors and persevered through a ton of misnomers and kept pressing until she got to a safe, protected place where she could try this thing for herself, like she didn't just randomly go home and be like, I don't need this insulin. And then somehow that'll get missed, trust me, because eventually this goes out, and someone's going to be like, Oh my god, Scott's, you know, got a lady on it says you don't have to take insulin if you have diabetes. I'm like, Okay, well, that's not what anybody said. But here we are, internet, right? Yeah, great, right, yeah. Well, I appreciate that you're that you're doing this. Tell your husband to shut up. I mean, what's he doing? You don't know about the power of podcasting.
This episode was too good to cut anything out of but too long to make just one episode. So this is part one. Make sure you go find part two. Right now it's going to be the next episode in your feed. Are you tired of getting a rash from your CGM adhesive? Give the ever since 365 a try. Ever since cgm.com/juicebox beautiful silicone that they use. It changes every day keeps it fresh. Not only that, you only have to change the sensor once a year. So I mean, that's better. Arden has been getting her diabetes supplies from us med for three years. You can as well us med.com/juicebox, or call 888-721-1514, my thanks to us, med, for sponsoring this episode and for being longtime sponsors of the Juicebox podcast. There are links in the show notes and links at Juicebox podcast.com to us, med and all the sponsors. This episode of The Juicebox podcast is sponsored by the Omnipod five. And at my link, omnipod.com/juicebox you can get yourself a free, what'd I just say, a free Omnipod five starter kit, free. Get out of here. Go click on that link, omnipod.com/juicebox check it out. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox links in the show notes. Links at Juicebox podcast.com. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcast and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card? Hey, kids, listen up. You've made it to the end of the podcast. You must have enjoyed it. You know what else you might enjoy, the private Facebook group for the Juicebox podcast. I know you're thinking, uh, Facebook, Scott, please. But no. Beautiful group, wonderful people, a fantastic community. Juicebox podcast. Type one diabetes on Facebook. Of course, if you have type two, are you touched by diabetes in any way? You're absolutely welcome. It's a private group, so you'll have to answer a couple of questions. Couple of questions before you come in, but make sure you're not a bot or an evildoer. Then you're on your way. You'll be part of the family. The podcast contains so many different series and collections of information that it can be difficult to find them in your traditional podcast app. Sometimes. That's why they're also collected at Juicebox podcast.com, go up to the top. There's a menu right there. Click on series, defining diabetes. Bold beginnings, the Pro Tip series, small sips, Omnipod, five ask Scott and Jenny. Mental wellness, fat and protein, defining thyroid, after dark, diabetes, variables, Grand Rounds, cold, wind, pregnancy, type two, diabetes, GLP, meds, the math behind diabetes, diabetes myths and so much more. You have to go check it out. It's all there. I'm waiting for you, and it's absolutely free. Juicebox podcast.com, Hey, what's up, everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob. That wrong way. Recording, doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast? You want somebody to edit it? You want rob you?
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